X-Linked Adrenoleukodystrophy (X-ALD) was added to the Recommended Uniform Screening Panel (RUSP) in February of 2016.
NewSTEPs partners with state newborn screening programs, partner organizations and federal agencies to provide a central location for X-ALD resources. If you have additional resources that you would like included, please contact NewSTEPs.
Newborn Screening Status: Map of the screening status of newborn screening disorders.
Data Collection: The collection of data from X-ALD screening will help ensure all babies are screened and receive appropriate follow-up of an abnormal screen. By providing this data and information on timeliness of diagnosis and treatment, a true picture of national prevalence can be developed. NewSTEPs will be collecting outcome data on X-ALD newborn screening, including quality indicators and basic information about the cases diagnosed with X-ALD. Specific data to be collected can be found in the NewSTEPs Data Repository.
Educational Resources: NewSTEPs has compiled educational resources that can be used to support screening efforts in states and regions. For all educational resources, pertinent publications and archived webinars please visit the NewSTEPs resource library and filter for X-ALD.
Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) Recommendations:
- Chair Letter to Secretary (September 25, 2015)
- Acting Deputy Secretary's Interim Response (November 12, 2015)
- Secretary's Final Response Regarding the Commitee's Recommendation to Add X-ALD (February 16, 2016)
- For information shared during recent ACHDNC meetings relative to X-ALD, please visit the ACHDNC meeting wepage.